Support Hotline: (866) 737-5999

Written by Larry Kellerman (MSA Coalition Board of Directors and Support Hotline Volunteer)

I happen to be one of the call-line volunteers for the Multiple System Atrophy Coalition’s support line. During these three-plus years, it’s been a privilege and an honor to listen to caregivers, patients, family members, friends and health care professionals who call and share their feelings and try to make sense of a devastating diagnosis.

One topic most often raised is the patient’s willingness to fight and beat the disease. Often it is stated with passion: “I’m going to beat this thing!”; other times it’s the patient’s insatiable desire for information about clinical trials or research-related resources to figure out what might help them beat MSA. This passion is not limited to the patient; the caregiver or family member typically feels the same.

In 2014 I was elected to be the first Caregiver Representative on the MSA Coalition Board of Directors, representing every caregiver of an MSA patient wherever they may be. The hundreds of email messages, comments to Facebook posts and face-to-face discussions I had with caregivers and their patients inevitably pointed to this desire to be the first to beat MSA.

It was also in 2014 that the MSA Coalition handed out its first research grants, five of them totaling $219,000. Three of those five have led to even larger research projects. Becoming a part of that effort made my wonderful wife and MSA patient Colleen so glad. Her goal every day was to beat the very Beast that was taking away her adulthood. She knew she wouldn’t benefit from that research, but she did do the next best thing; she donated her brain to the Langone Medical Center’s brain bank for future research. She was confirmed to be an MSA-C patient and her donation has already contributed to MSA research.

Four years ago, on February 4 she passed away. Since her death there has been a sea change in the growth in MSA research. Most of that has occurred because of the Coalition’s research grant program. As many reading this essay know, the research grant program is funded by us, by all of us who support fundraisers or donate for research. Those fundraisers not only contribute dollars to the research grant program, but they also raise awareness, which is so important in this endeavor.

Each of these last four years those donations have gone up, making funding more available for researchers intent on studying this devastating disease on four fronts. One front is biomarkers; medical professionals need biomarkers to help diagnose MSA, or more importantly to identify it years before it expresses itself. Researchers want to know the pathogenesis of the disease, studying the way the disease progresses. They want to study the pre-clinical aspects of the disease, when symptoms have yet to begin but the biomarkers are there. The fourth front is the clinical part, focusing on the observation and treatment of patients.

Over these last two years the MSA Coalition Research Committee and its Scientific Advisory Board (SAB) have done what any good organization intent on solving a problem sooner rather than later would do: review the original program and update and innovate where needed. The new program now approaches solving the disease through two avenues of research. One avenue funds and supports collaborative “core” grants while the other supports seed grants, which have proven very successful in past years.

In the latest call for pre-proposals to the seed grant program we received 26 from around the world. Pre-clinical and clinical research projects led the way, with projects examining the pathogenesis right behind. A smaller number of researchers proposed looking for the still-elusive biomarkers needed for an accurate diagnosis. Those 26 pre-proposals have now been reviewed by a wonderful group of volunteer MSA researchers and medical professionals with the next step in the process being the call for final proposals by those scored highest by that group.

I began this story talking about the many individuals who call the support line and, through the course of the conversation, state their avowed desire to beat this Beast. Every member of the MSA Coalition Board of Directors and its SAB share that desire. Using funds generated by many of you and the minds and creativity of researchers globally we will solve this disease.

Lao Tzu said “A journey of a thousand miles begins with one step.” We’ve taken the first step – now we can pick up the pace.